Campath Trial

[Lisa Z]

Trying to locate other patients who did the Campath trial at NIH. I did it last spring, (March 2009) , and am looking for others to compare results, etc. Can e-mail at: lzieske@verizon.net

[Greg H]

Hey Lisa Z!

Did you ever have any luck finding folks who had done Campath in the NIH trial? I gave them a call after reading about your experience, had a great chat with Dr. Matthew Olnes, and am seriously considering giving this trial shot, if they will have me.

I, too, am curious about what experience other folks have had with this drug and this trial.

The nurse coordinator told me most folks go home after the 14 days at NIH in good enough shape to go back to work (or whatever they did prior to admission) without any huge infection precautions (other than the anti-virals and anti-pneumonia stuff they put you on).

Was that your experience?

Thanks,

Greg

[Lisa Z]

There was a small summary of the trial in a publication/conference last December, but since the trial is still on-going results won't be published until it is completed, I guess

If you spoke with Barbara or Olga, their response was correct. You basically go home and back to whatever it is you do. I work in a very large high school.. I was totally scared going right back that very 1st Monday after my trial was over, but I was, and continue to be, very careful about washing my hands or using Purell. I get very nervous, though, during the peak flu season, I must say! Fortunately for me, my neutrofils have always been decent. Never had to go on Cipro after the trial either.

I met a woman at the AA/MDS conference in July and she has SAA. She had previously had ATG/cyclosporine and had recently relapsed. She recently did the Campath trial at NIH. While she had some problems afterwards that I did not, I believe that now she is doing fine. Everyone reacts differently. Some may have a fever and have to get IV antibiotics, or may have a rash, or may need transfusions for a while.

But, Dr. Olnes, who you spoke to, is a great doctor to have as the principal investigator. He knows his stuff, is able to talk to patients at a level they can understand, and he is excellent on answering questions you may have after you go home. Even 1.5 years after the trial, I still get quick responses to my questions.

Where do you live, Greg?

[Greg H]

Hey Lisa!

I'm in North Carolina, right in the middle of the state.

Thanks for the info on your immediate post-trial success. I work largely from home, so I have nowhere near the people contact you would have in a large school (and Lord knows teenager hygiene is not always the best in the world!) I do have chickens and dogs and cats and a garden, however. If I get to do the trial, I'll ask the docs all about that sort of stuff.

I did speak with Barbara, who was great, and Olnes was very good at explaining the theory behind the treatment, which made perfect sense to me. I'm just a layperson, but I have done a lot of reading about MDS in the past six months, and it seems to me what we know call MDS is really a bunch of different ailments that, one day, will all get split apart and have different names, once folks understand it better. This Campath treatment targets one (or two or three) of those variants, I think, which makes more sense to me -- at least at the outset -- than bringing in the standard shotgun treatments when they may not apply to this particular variant.

There's a neat lecture here -- which you may have heard in person if you went to the AAMDS conference in Seattle -- by Dr. Eilhu Estey about the fallacy of considering something a "standard treatment" that only buys most folks nine months.

NIH has all my info at this point, so now it's just a wait to see if I get a pre-screening invite.

Are you Trisomy 8? You may have mentioned that earlier; apologies if I have forgotten.

Greg

[Lisa Z]

Ah....North Carolina. Went to the Outer Banks this summer for a week. A lovely vacation, for sure!

The dogs and cats will be OK, but don't know about the chicken and digging in the garden would be a no-no.

Hope you get the invite to NIH. I was very pleased with the professionals that work there.... from phlobotomy, to the people who bring your food up, to the nurses, doctors, clery, psychologist, etc., etc.

I don't think I was Trisomy 8. Now, in any case, I have normal cytogenics.


Best of luck to you as you wait to see what they decide.

Lisa Z
Philadelphia

[Greg H]

Hey Lisa!

Whereabouts did you vacation on the Outer Banks? We used to go up north of Corolla, past where the pavement ends, and rent a beach house that you had to drive up the beach to reach. It was great!

Then we bought an old Airstream, which we pull down to a really neat State Park on the SC Coast.

Did you have a family member or someone accompany you when you did the 14-day stint at NIH? My wife and I were talking about what might be the best strategy. She'd like to be close, so I'm hoping they have a great deal with some local hotels. My daughter often stays in a campground when she visits family in Baltimore, so maybe we'll take the Airstream.

Thanks for all the info.

Greg

[Lisa Z]

Greg-

Actually, we stayed in Corolla, in a community called Corolla Light. We did the 4 wheet drive trip up in the area you stayed and saw the wild horses. Also, (funny), saw one vehicle getting towed off the beach; got stuck in the sand. The homes up there are lovely.

While they may tell you most people come alone, my husband came with me. There is a woman who rents out a room in her house, right in the development across the street from one of the main entrances to NIH. It is $49 a night. She is very nice, if she has a room vacant when you go (if you go). However, I kind of had an emotional melt down when I arrived, so Bob came and stayed in my room. He used one of the chairs that folds out into a bed. A friend of mine who I met at one of the conferences, and just had the treatment, her husband brought an air mattress. I think you most oftne have a private room, but not 100% guaranteed. If you don't, spouse cannot stay, of course. The hotels in the area are very expensive. Sometimes in our follow up visit, we stayed at a friends house in Rockville, but she just sold her home.

[Greg H]

Hey Lisa!

We got our old Jeep stuck once, but, fortunately, we had a friend with another four wheel drive and a tow-strap.

Thanks for the tip on the room. I'll file that away in case we get to go up for the treatment.

Take care!

Greg

[Nadia T]

I have been accepted for a clinical trial for Campath and am considering it. My biggest question is about the possibly permanent suppression of WBCs. Since opportunistic infection is a major concern, this is worrisome. I know that counts go down for as long as a year, and you get drugs to prevent infection, what happens after that?

I would love to hear of people's experience with Campath.

[Hawaii Bill]

Hi,

I copied this link to a thread about Greg H's experience with Campath:

http://forums.marrowforums.org/showthread.php?t=1784

if the link does not work, I am sure you can find it with a search.